Monday, September 2, 2013

Auntie C and her breath-holding niece

Aunt C. with niece R.
This is very painful. Our grand-daughter, R., who is a year old, has had numerous breath-holding spells of the Cyanotic type (= turns blue), several of which were also of the Complicated type (= with a seizure). See Wikipedia.

She has had 2 EEG's which, thank Heavens, were normal. Until last week, every doctor consulted reassured my daughter and son in law that these are totally benign episodes requiring no intervention. But then she had two more such events within 24 hours. Consequently, the neurologists "reluctantly decided" (their word choice) that she should be medicated with Valproic Acid. The goal is not to prevent the breath holding, just the seizures.

For now, my daughter and son in law have decided to risk leaving R. untreated because of drug's possible long-term side effects. Needless to say, this is a difficult decision and a stressful time.

Complicating the issue are my feelings of guilt. The neurologist mentioned that considering the "family history" - i.e. C's problems - our granddaughter may have an inherited propensity to seize after the Breath Holding Spells. (Only 10% of breath-holders seize). The thought that our genes may be contributing to this problem is upsetting. Geneticists  have assured us that C.'s condition is almost certainly not hereditary. How are these conflicting comments reconciled?

R.and her two cousins occasionally play in C.'s company. The 3 of them (ages 1, 2 and 5) are by turns bemused, intrigued and affectionate towards her. The older two ask the predictable questions: why can't she walk, why can't she go to the toilet, why can't she talk etc.  R., the youngest of them, gravitates toward C.'s wheelchair then climbs up and stands on C.'s thighs exploring and hugging her. Of course, C. doesn't respond independently so I help her reciprocate with hugs and strokes.

I noticed that C. initially throws her head way back to avoid contact when her niece ascends her. But she eventually settles down and sit with upright head. I interpret that as "Hey, this is actually fun."

The exposure of young children to people with disabilities has been the subject of study conducted at the University of Exeter Medical School and reported this week by the British Psychological Society. The  "surprising" conclusion?
"Greater exposure to people with disabilities could help reduce discrimination and prevent the low self-esteem and depression that can result." [Medical Express]
"Mary" posted this pithy comment:
"They actually had to do a survey to figure this out?"
But here's why I think such studies of the obvious are necessary. Many people feel visceral and deep-seated fear of, and repulsion toward, those with disabilities. Logic doesn't speak to them. It takes pushes and shoves from every direction - legislation, court rulings, and even silly surveys -  to dispel those prejudices.

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